Milk Money Chronicleshttps://milkmoneychronicles.com
Cheers to Imperfection.
Fri, 22 Feb 2019 05:48:11 +0000 en
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The Other Side.https://milkmoneychronicles.com/2016/04/17/the-other-side/
https://milkmoneychronicles.com/2016/04/17/the-other-side/#respondMon, 18 Apr 2016 03:21:43 +0000http://milkmoneychronicles.com/?p=635Continue reading The Other Side.]]>George and I prepared ourselves as best as possible as we headed back to the PICU to see Taryn for the first time. Only 2 people were allowed in a room at once. We walked hand in hand down the curvy hallway, so anxious about what waited ahead. Taryn’s room was in the very back. As we passed the other rooms, I nervously peeked inside. My eyes scanned the surroundings, darting from room to room. I tried not to look. It felt like I was invading others privacy. But, it was impossible not to wonder about the other patients, the other families, and the other trials flowing throughout this ward. Finally we reached Taryn’s room. It was shared with a very tiny baby, about 3 months old or less. We had to pass through their room, and through a curtain to get to ours. We placed our hands under the automatic hand sanitizer dispenser (a requirement before entering any room at any time) and I caught my breath as we pulled back the curtain and entered. Baby Taryn was propped up, slouching forward over some pillows. She was sleeping peacefully. While her incision did look massive, it also was incredibly well done and looked far better than I had imagined it might. Tears filled our eyes as we gently reached down to caress her back and kiss her head. We each took our turn bending down over the lower side of the crib and talking to her. George and I looked at each other — we had made it to he other side.

We hung our Cranio Care Bears prayer chain on her crib, and after bringing some family back 1 by 1 (each time George and I trading out our space) we finally started to settle in. The nurses brought us back a small plastic package with hair inside. It was Taryn’s hair saved from her surgery. Her first hair cut.

You can’t eat in the PICU. It was getting late and with the very little we’d been able to stomach throughout the day, George and I headed to the cafeteria to quickly get a bite to eat. The nurses gave us a pager to take with us in case we were needed. I guarded that device with my life. Though the nurses told us to take our time, we didn’t.

The cafeteria food was always so deceiving. It smelled heavenly, but the taste nearly always disappointed. We weren’t complaining though. We had so much to be grateful for. After we shoveled our dinner down, we returned hand in hand to our room. As we approached our long hallway, we recognized the familiar cry of our baby girl and started to run. She had just hit the point where her pain medication dose lapsed and before they had the chance to get her a new dose she woke up in pain. We sprinted frantically into the room as the nurses gave her her next round of meds. George and I laid with her desperately trying to calm our shaking baby girl down by reaching over the edge of the crib on our tippy toes.

We couldn’t pick her up. Taryn was literally restrained and attached to the bed to ensure she didn’t accidentally remove her lines. Pain medication, IV, monitors, lights all surrounded her tiny body. There was a large drain that ran all the way across her forehead (under her skin) collecting the fluid from her head into a large bulb in the back. Needless to say, she looked intimidating. If we missed her pain medicine dose by only 10 minutes, trauma would ensue. It would go on for a good 20 minutes until everything kicked in and Taryn settled back down. These moments were the worst. I prayed to take the pain away. I prayed to take the pain on instead. I prayed for the time to pass quickly. I prayed for strength. The doctors and nurses were great. I don’t mean to imply that they were not doing an outstanding job. This was just the nature of the surgery, the age, and our experience. I knew more of this same reaction would be on the way. It continually seemed that as I eased one fear, a new one took its place.

The limited TV in our room played children’s shows. I put on a show about puppies to serve as background noise at a nurses urging thinking “How will this help her? She doesn’t watch anything on TV yet.” But in the end, I still put it on. It comforted me to feel like I was doing something to help her when I was so limited in my offerings. George attempted to sleep on the window seat. I attempted in a recliner chair. It took all of my active weight to make it recline — the minute I relaxed, it violently folded me up into a ball. We’d switch spots throughout the night. But the bottom line is, we didn’t sleep. Nurses were in and out, we were constantly fearing the pain med canyon, and even though our adrenaline had been running all day in overtime, it wouldn’t shut off.

For the most part, Taryn would just doze, hopped up with pain medication that worked so well even her eyelids closed super slow every time she blinked. It was on this second day that I was finally able to hold her. When the nurses told me I could, I was so excited, and so scared (such a familiar feeling at this point). Taryn had so many lines crossing in and out of her body. All I wanted was for her to be comfortable. I was worried I would disrupt things… but I desperately wanted to snuggle her. As the nurses placed her in my arms, I swallowed her up with my body trying to be as close to her as possible. I held her as long as I could. It felt amazing to have her back in my arms after 2 excruciating days.

Family came in and out through the next couple of days. Really much of that was a blur. George met Russell Wilson in passing (lucky!), and we struggled to remove ourselves from the room long enough to shower simply because we wanted to stay by Taryn’s side.

The little one next to us was in dire straights. The curtain between our rooms left little privacy and it was a constant reminder of how lucky we were. Every family we met, every person we met — we felt an immediate bond with. I prayed for them everyday. Their presence made me stronger. If they were in the hospital for this…. and we were only here for this… we knew needed to continue to be strong and grateful.

We knew we would eventually get to go home, and the depth within that thought was overwhelming.

Running on little sleep, George and I often felt we couldn’t enter back into Taryn’s room without crying. We would take turns trying to console each other and alternating being “the strong one.” He would cry. I would be his rock. I would cry, he would console me and be my strength. We needed each other.

Taryn’s face did swell considerably, but not as bad as we had been warned it might potentially be. Her eyes did not swell shut. Most of her surgery was completed on the back of her head. And while she did swell around the outside of her face and her ears, we were grateful she never was completely without eyesight.

On the 3rd day post op, Taryn’s aunt Amanda came up to see us. She brought a stuffed teddy bear to give to our baby girl. When Taryn wrapped her tiny hands around the fluffy bear something amazing happened. She smiled. This was the first time George and I saw her sweet smile since surgery, and to us it was a glimmer of hope and reminder of our once constantly smiling little one. Our familiar baby girl, she was still in there.

On the 4th day we were moved down out of the PICU. Once Taryn started progressing in her recovery, she progressed fast! We were excited at the prospect of a normal (still shared) room with a flat sleeping area that barely fit 2 people, but 2 none the less! As 8pm rolled around we snuggled in for some sleep for really the first time in our hospital stay. On queue, the poor baby we shared the room with started crying non-stop into the early morning hours. Nurses in, nurses out. Mom was crying. Doctors in, Doctors out. It was a mess. As much as we wanted to be somewhat annoyed, we simply couldn’t be. We felt so much compassion for our roommates. They had been in the hospital for months already and weren’t expected to leave until Christmas (remember this was before Thanksgiving!). Needless to say, we didn’t sleep.

The next day, we were finally cleared to leave! We bathed Taryn, and put her back into “real” clothes. We were on the verge of getting to see our other kiddos and getting back to our normal. I was a mess of emotions. George pulled the car around and I ran Taryn out in her carseat, ducking through the sideways Seattle rain. I buckled my seatbelt and as we started to drive away I broke down in tears – again. There was that gut-wrenching feeling – again.

However, this time, the root cause behind this feeling was the overflowing feeling of gratitude. We were leaving knowing so many of the families we met and babies in the other rooms we passed – were still fighting. Because those other families didn’t share the opportunity to go home, I wanted to be sure I didn’t take it for granted. I offered up prayers of thanks throughout our drive home. Being at Children’s offered us a very humble perspective on life.

The boys hadn’t seen Taryn at all since we left for surgery. By the time we got home, a good portion of the swelling had subsided. Both boys were waiting for Taryn as we walked through the door. When she saw them, she lit up like we hadn’t seen in days. It was like our baby was back. Her glowing reaction was amazing. She was home and she knew it.

Our sweet neighbor arranged dinners for us for a week. It was so comforting to come home to such support. It meant the world to us.

For nights after our return home Taryn slept with us in our bed. Many babies have post traumatic stress associated with the surgery. However, it wasn’t long before Taryn made her way back to her bed, and finally after a couple of weeks she slept through the night as if the surgery never happened.

—————————–

There are times when I don’t think about the surgery at all. And of course, others where I am reminded of the trauma and the pain, the strength and the growth…

When I put sunscreen in her part and have to add extra in areas because her scar peeks through…

When I pull her hair up into a ponytail and I can see that her head shape is still a bit different…

When I put a bike helmet on her head, and it doesn’t fit exactly right…

All these reminders serve to keep me grateful. We are grateful for our baby girl, and every minute we have with her. We cherish her developmental milestones just a little bit more, because we are also watching for delays and we recognize the mountains she’s moving to be where she is today.

Do I have worries about her future? Absolutely. I worry she may be embarrassed of her scar when she is older (though she has hair galore to cover it). I worry she may have future complications (though it’s not likely).

But I settle those worries with my humble gratefulness to God for his protection and love over our baby girl. This journey we experienced was trying, and hard. It cut us to our core. And yet, through the pain we have found an inner strength and a new perspective on our daily gifts.

Don’t take the little things for granted. Because sometimes those little things, turn into big things and you realize just how delicate and important they are.

]]>https://milkmoneychronicles.com/2016/04/17/the-other-side/feed/0IMG_4193milkmoneymomIMG_4194IMG_4206IMG_4195Surgery.https://milkmoneychronicles.com/2015/12/31/surgery/
https://milkmoneychronicles.com/2015/12/31/surgery/#respondThu, 31 Dec 2015 23:17:00 +0000http://milkmoneychronicles.com/?p=516Continue reading Surgery.]]>The morning alarm came all too quickly. My adrenaline spiked the moment it went off. We took turns taking a quick shower and dressing in our comfortable clothes as we prepared to settle in for the long day ahead. Taryn was happy and as sweet as ever. Meanwhile, the pit in my stomach nearly swallowed me whole. I tried not to think about what was about to happen to her, now only hours away. I took pictures with her in the hotel room. A nice round of selfies, because, well… I wanted to remember what she looked like right before surgery. And because I was so scared at what might happen next that I wanted pictures to remember her by. You may sit back and think “that’s dramatic,” but it was my truth in that moment.

Robotically, we packed up and jumped in the car for our 5 minute drive to the hospital. I remember it all so clear. The lights of the cars passing by in the dark in the early hours of the morning. Taylor Swift playing “Shake it Off” on the radio as we tried to distract ourselves. The prayers rolling constantly through my head. I remember unbuckling Taryn from her carseat and holding her so tight before we walked into the building, breathing her in. It was time. It truly was here.

We checked in as usual at the registration desk, but this time they gave us a lanyard with our credentials, as opposed to the daily sticker. For some reason, this simple gesture was so symbolic to me in that moment. We had credentials to stay in the hospital. This was happening. I didn’t want that special privilege or those credentials. I sheepishly put the lanyard around my neck. I was so scared I was shaking. It felt like a noose, holding me captive.

We checked in next at the nurses station where Taryn was given her wrist bands and then walked to the waiting area. George and I barely talked as we waited. What was there to say? We were terrified. We took turns holding Taryn tight. Kissing her head. Squeezing her tiny body. And before we knew it, they called her name. With extreme trepidation we took her over to kiss my mom, and it took everything I had not to let the tears fall. I feared if I started, I wouldn’t have been able to stop. A feeling I had come to know all too well over the past few months.

We walked down the long, zig zagging hallways to the OR prep area. Dr.’s and nurses in full scrubs were already busy at work. We navigated our way through them and into a room that had a door on rollers, a couple of standard chairs and a rocking chair. They let us know the doctor would be in in just a moment, and the door shut behind us. It felt like a prison cell to me. Of course, it wasn’t anything like that, there were warm colored pictures on the wall, but in my mind, I felt trapped. The temperature was low and cool. I definitely was uncomfortable. I tried to keep Taryn occupied in the room as we waited, pointing out all of the different figurines on the wall mural. It was only 2 minutes or so until the team of doctors made their way in to check in on Taryn, to review her head, and to check in on us. They asked if we were concerned about when they had to take her back. We were. They pulled together a medication to make her woozy in an effort to make our separation easier. I wanted some for me…..

When Dr. Birgfeld (one of Taryn’s surgeons) stepped in he was sweet, kind and reassuring. I tried to keep it all business, that is, until he asked how George and I were doing. Hot tears spilled down the side of my face. The words wouldn’t come. I sat there crying and silent, trying with all my might to speak, but I couldn’t. He sweetly smiled and told us that they understand they are working on our most special little one, and how this is often hardest on parents. The fact that he took the words out of my mouth did indeed make me feel better. They left us to change Taryn into her baby hospital gown, and then swiftly came in to deliver the medicine to relax her to a “drunk-like” state. I realized I had been hoarding Taryn since we were in the room, and quickly handed her to George to snuggle. I’ll never forget him rocking her, holding her so tight in that chair, fighting back tears.

She lifted our spirits as she became comedic under the influence. She stared at George so lovingly, as she proceeded to play with his lips like they were the coolest things she’d ever seen before. This moment was a bright spot, as it actually made George and I laugh at a time when I didn’t think that was possible. Soon after, the team came in ready to take her back. It’s a good thing George was holding her, because he handed her over calmly and quickly. If it was me, I’m sure I would have nearly fought the nurses and doctors – not wanting her to let her leave my grasp. They took her blanket and her binkie with them, which did wonders in terms of my comfort level. And like that they were gone. Taryn didn’t even flinch at the transfer. They left the room with her, leaving George and I alone to collect ourselves. We cried. We hugged each other. We felt so out of control; knowing we had to trust the life of our baby to these amazing doctors. This was finally it. After a couple minutes we left the room feeling empty and headed to the nurses desk we were instructed to go to. There they gave us a pager. They would call us throughout the surgery and give us updates. Though we had just sent her back, prep would take quite some time, so they let us know it would be quite awhile before they paged to let us know she was back in the OR.

We walked out of the maze of halls and back into the waiting room to meet my mom. I can’t explain the sense of lost control that I had at that moment, but it was so clear to me. I’m naturally a control freak. I like to prepare my own outcome, or at least know I’ve contributed everything I could to the success or failure. In reality I guess that’s where we were and exactly what we had done, but sitting back and just waiting, just trusting… this was a hard life lesson. We made our way to the cafeteria. People tried to get me to eat, but I couldn’t. George and I had agreed to participate in some genetic testing. Soon after we made it to the cafeteria we were called up to have our blood drawn. This was actually a nice way to break up the day. We had to be somewhere, to be doing something other than just waiting, staring at the pager. When it went off for the first time, I panicked trying to get to a phone. It was the nurse telling us Taryn was all prepped and they were starting surgery. That whole time I was certain they were already working intently on her head… and they were just starting. I knew it was going to be a long day, but reality was setting in as to what I could truly expect.

Family was on their way up to meet us as we waited. And… so was a certain angel…

You may remember I mentioned Shelby, one of the heads of Cranio Care Bears, in a previous post. She had coordinated to bring me my coveted Care Bear package to the hospital during Taryn’s surgery. But here’s the thing…. on the day of the surgery, while I really wanted the Care package, I was worried about meeting with Shelby. I was concerned about sitting with someone who I didn’t really know during the time when I was at my literal lowest. I didn’t want to have to hold a legit and friendly conversation, when I all I wanted was to lay my head down on the table and cry. Secretly, I wished she would drop the package and then be on her way. Little did I know, Shelby — she was our angel. I truly mean that with every piece of my being. I honestly believe she was sent our way to save us. She was easy to spot with her welcoming smile and purple CranioMom shirt. And from the moment she sat down, I wanted her to stay.

Shelby felt like part of the family instantly. She was calming and all-knowing in the best way. I didn’t feel like I had to entertain her. She was just there for us, as a beacon of strength, someone who had gone through all the emotions we were going through. Someone who truly “got it.” My family all kept saying “she’s great, we’re so lucky she’s here.” And they were right. We tried to eat in the afternoon, and I think I did actually manage to down some food, forcing myself so I could be strong for Taryn when she came out of surgery. All of our pager updates had been very positive and regular. Thank goodness for those.

As we finished up our late lunch, I felt the familiar buzz of the pager and jumped for the closest phone. This time the nurse said Dr. Birgfeld was waiting outside the OR and wanted to speak with George and I. My heart sank, my face went white, and I thought I might faint. I hung up, ran towards the table where everyone was seated and told them the news. I was ready to sprint for the OR. I was sure something was wrong, something had to have gone wrong…. Shelby calmly smiled and said “Great! They’re done! He just wants to talk to you about how it went.” I can’t tell you how much relief I felt in that moment. Had it not been for Shelby, I would have sprinted down to the OR frantically. She gave me breath, and George and I were able to gather ourselves and walk to meet the surgeon.

Dr. Birgfeld, all suited up in surgical gear met us outside the nurse’s station. As we sat together, the words “Everything went wonderfully” left his lips and for the first time all day I took a breath. She received a blood transfusion (as expected), but the surgery went well and they were just finishing up everything. I wanted to jump up and hug him, and from the look in George’s eyes, he wanted to do the same. We contained our tears, but the gratitude we felt was overwhelming. What do you say to the man who just saved your daughters life? We ended up shaking hands, as our gratefulness beamed from every inch of us. They would be calling us in a couple hours to see her.

The relief was amazing. We knew we had a long road still ahead, but George and I felt the first little bit of peace in that moment and we tried to relish it. Hand in hand we walked back to meet our family and share the news. With a long wait still ahead, Shelby lead us to the other more comfortable areas of the hospital, the spaces we didn’t yet know existed and continued to aid in our passing of time. As I finally sat and went through the Cranio Care Bear package I was in awe with the amount of care and love that goes into each one. Aside from sweet amenities meant to help keep parents and their babies more comfortable during their hospital stay, the most heartwarming piece is the prayer chain complete with personalized ribbons. Others have donated these ribbons, each with a different saying about prayer, strength, hope, etc. Encouraging bits to hang on your child’s hospital crib. We cherish that chain, and we keep in Taryn’s room to this day.

Finally, we received word that Taryn was set up in her room in PICU, and we could go see her. I was so excited to be able to kiss my baby. And also, so scared. I had no idea what state she would be in….

]]>https://milkmoneychronicles.com/2015/12/31/surgery/feed/0thumb_IMG_4186_1024milkmoneymomPre-Op Painhttps://milkmoneychronicles.com/2015/11/02/pre-op-pain/
https://milkmoneychronicles.com/2015/11/02/pre-op-pain/#respondTue, 03 Nov 2015 04:48:26 +0000http://milkmoneychronicles.com/?p=492Continue reading Pre-Op Pain]]>The days leading up to surgery were such a blur. I committed myself to helping with family gatherings in an effort to turn my attention away from my fears. But let’s be honest here, no matter how I tried, those fears haunted me daily. Remember, our pre-op (which was an all day event) was moved to the day directly before surgery. Initially, I wanted to come home after the pre-op. I wanted to spend the night before surgery in the comfort of our own house, as a family, all together. I desperately wanted to cloak myself in the last minute, unchanged normalcy of happiness with my children. However, instead, we agreed to reserve a hotel in Seattle near the hospital, relieving ourselves from the potential struggle of the morning commute and uncertainties surrounding it (surgery check in was 6:45 am).

Looking back, we definitely made the right decision. At the last moment, George and I realized we needed to figure out a better transportation plan for our time in the city. I was leaving my car for my mom to use for chauffeuring the boys to and from sports practices, and trying to park George’s lifted truck in Seattle garages sounded like a nightmare. Luckily we had some sweet friends who loaned us their car for our travels (Big thank you to the John’s).

3 days before the surgery date we needed to start prepping Taryn for surgery, washing her hair with special shampoo and swabbing antibiotic up her nose. I remember the first time I put her in the bath and reached for the shampoo that had been staring at me from the shelf for the last couple of weeks in wait. It was really time. This was the moment when the proverbial start gun went off and the countdown clock commenced. Our official surgery start was time stamped and we were thrust into what felt like the point of no return. After binge reading through blogs and community forums on Facebook for Craniosynostosis, I attempted to pack for the hospital journey ahead. Standard toiletries, blankets, extra socks, phone chargers, pillows, sweats, for George and I. Button up pajamas for Taryn (ones that wouldn’t matter if they ended up stained in blood — chilling but true), her favorite blanket, bottle and most importantly the stuffed musical bear I had been putting her to bed with for weeks playing sweet lullabies. If her eyes ended up swelling shut we hoped this familiar toy would give her comfort. (P.S. any family members of Cranio babies, I’m happy to give more detail here to help prep with your hospital stay. Send me a note!) I kept checking and re-checking our bags, until I figured it will be what it’s going to be.

We left early in the morning after our dreaded goodbyes to the boys.Naturally, we didn’t want the boys to be scared. George and I played our parental roles just right, but inside I was shaking, and my eyes were hot with tears. I remember tucking Taryn into her car seat, and somehow my feet kept moving, ultimately landing me in the front seat of the car. This seemed miraculous at the time because truthfully all I wanted to do was to yank her out, hold her in my arms, and pretend this wasn’t real. With the recent, unexpected passing of my grandfather still less than a week fresh, I was incredibly raw and equally weak at controlling my emotions. I felt trapped in my tortured imagination.

Before we knew it, we were at Children’s. George and I settled in for what was a long day of appointments. We started out with positive attitudes and strength shared between one another, and by the end, George and I were beaten down, emotional, terrified, and tired (and my memory is so vivid of just this exact emotion that I have tears streaming down my face as I write this). Please don’t take this wrong. The staff at Children’s is amazing, kind, and we are so incredibly grateful for them. Unfortunately, delivering scary news and making sure patients are informed of all potential complications is part of their job as well. They shared with us how all the things you don’t want to happen — could happen. Because after all, this is surgery, and this one is intensive. One of the many doctors came in and gently explained all the risks involved, reminding us a potential complication could indeed be death. This is one of those heavy pieces of information you know to be the truth, but hearing it from a medical professional was extremely hard (and yes, normal for any surgery, but still…). It was at this time they asked us to sign the operational consent form. The doctor turned to me for a signature and I couldn’t speak. I couldn’t do it. I knew George didn’t want to do it any more than me, but there was literally no physical way I was going to be able to make my mark. It felt like we were signing her life away. As I looked at him across the room with tears falling from my eyes — he knew this — I know that he knew, and he nodded his head that he would sign. In retrospect, this could have been viewed as the moment we agreed to save our daughters life. Instead of signing our daughters life away, we were committing to saving her life. But at the time, it was hard to see past the next 2 minutes, let alone the future. The medical team comforted us and stepped out for a moment as George and I both dropped our heads into our hands and cried. We hugged our little baby doll, obliviously crawling around the room, and we sent silent cries of prayer to the Lord above.

We continued to meet with each surgeon and their team, nurses, social workers, and other specialty clinicians in preparation of the next day. Taryn had her blood drawn again to test the speed of clotting (one more time). This was again traumatic unto itself because of her tiny, delicate veins. By the time we were finally done, it was evening. Drained, we left the clinic in silence and tucked a sleepy Taryn into her car seat in preparation of meeting my mom at the hotel just down the street. When we got into the car George and I broke down — again. Feeling helpless and out of control. Scared out of our minds. I looked at him and said “Let’s just run for the border, let’s run away.” I know how funny that sounds, but in the moment, I truly meant it. Heck, I even knew it sounded funny when it came out of my mouth, but it was what I felt at my core. I just wanted to run. But running wouldn’t do any good. This was our babies health we were talking about. I was feeling trapped and scared. Eventually, we collected ourselves and made our way to our hotel a couple miles (thankfully) away.

We checked in and met my mom who was staying with us. Anxious to get some food (or rather finally feeling like we could, or at least should, get something in our stomachs), we looked up the closest place for delivery pizza and placed an order. After a 90 minute wait amidst Monday night football fans and a snafu with the delivery driver, we finally received our meal. We ate, gave Taryn her final bath and antibiotics, and then settled into bed (not sleeping a wink), cuddling each other tight. I set my alarm to wake in the middle of the night to give Taryn her last bottle. A night never felt so long. Or so, I thought….

]]>https://milkmoneychronicles.com/2015/11/02/pre-op-pain/feed/0Taryn1milkmoneymomTaryn 2Heaven Gains an Angel.https://milkmoneychronicles.com/2015/09/05/heaven-gains-an-angel/
https://milkmoneychronicles.com/2015/09/05/heaven-gains-an-angel/#respondSat, 05 Sep 2015 20:43:47 +0000http://milkmoneychronicles.com/?p=484Continue reading Heaven Gains an Angel.]]>With our new date upon us, I was quickly trying to arrange everything to be as organized as possible. Tying up loose ends at work. Putting Taryn to sleep with a sweet bear that played music to give her comfort in the hospital in case her eyes ended up swelling shut. Organizing who was going to watch the boys, what days, letting teachers know the circumstances…. on and on. Amidst all of this, I was reminded of just how out of control we truly are, which of course, is horrible for me at any time given my personality, and even worse given, well, all of the circumstances surrounding my reminder. It was horrific, heartbreaking, and simply put, too much.

This story I’m about to tell, it still haunts my heart sometimes, but I need to get it out to make progress. It was one week before Taryn’s surgery date — exactly. I was at work, and like any other normal day, moving from one meeting to the next. As I closed out the previous meeting, I heard my cell phone vibrate with a text. I didn’t look at it immediately. Finally, as people were transitioning out of the room, I glanced down. The text was from my cousin. He wrote of remembering “grandpa” for the way he always was, and at least he was with grandma now. My heart stopped. What in the world? Did he mean this text for me? Surely not.

Let me start by saying that my grandfather was in his 80’s, but he was so young. He was an inspiration. Going to the gym daily and working as a real estate salesman harder than many 30 somethings do. He was successful, charming, witty, and well liked and loved by all who knew him. He was funny. And he was fit. My grandfather worked out all the time. More than me. Needless to say, he was not old. And I never expected to hear word that his life was in jeopardy.

I abruptly left the conference room, and headed back towards my desk, frantically calling to find out what was going on. I called once, twice, three times and got no answer. I called my mom. No answer. I was shaking not knowing whether something was wrong, or this was a misunderstanding. Oh, how I wanted it to be a misunderstanding.

After what felt like years, my cousin called me back as I sat shaking in my cubicle, with my team staring at me. I grabbed the phone and walked towards the back door of our office. And that’s when my heart collapsed.

He was gone. My grandpa had a condo in Palm Springs. As I mentioned, he was fit, and he was out on his early morning walk. A walk with a flashlight in hand, light colored clothes, and reflective shoes. None the less, he was hit as he crossed the street, at the corner just near his condo. He survived the ambulance ride to the hospital, but thereafter, he passed. As my cousin shared this with me, I began running towards the back office door, tears streaming down my face and when I reached the cool air outside, I sat down on the step at the entrance, and just cried. “He’s gone,” were the choked up words my cousin shared. He didn’t know that I didn’t yet know the accident happened. My mom and his mom were on a plane already to Palm Springs. My mom hadn’t called yet intentionally. With everything going on she didn’t want to worry me, and at that point, she didn’t know the details of his condition. She already knew clearer than most just how raw I truly was. My sweet cousin had no idea I didn’t know what was going on. And to this day, I don’t ever want him to feel bad for that. In actuality, I feel bad that he was stuck sharing the news when he was simply trying to reach out in comfort.

A couple minutes later I was able to reach my mom. She was such a pillar of strength for me in that moment, as she navigated through the horror. I called George and I drove home feeling absolutely numb. I was tragically reminded just how fleeting life can be, amidst my daily praying for the safety of my precious baby girl. It was all too much. I ate, literally about 12 mini Kit Kats, and crawled into bed, crying myself to sleep. I didn’t know what else to do.

The only solace I could pull from the situation at hand was that heaven had gained an amazing angel. One who I am absolutely certain watched over Taryn during her surgery. Joined together once again with my beautiful grandmother, slow dancing to the sunsets, and making everyone around him laugh. There are not words for how much I love him.

At just one week prior to the dreaded date ahead, my world was crumbling in horrific ways that even my imagination couldn’t muster. It was one of the darkest times I have ever experienced, and yet, somehow, the Lord gave us the strength to put one foot in front of the other.

]]>https://milkmoneychronicles.com/2015/09/05/heaven-gains-an-angel/feed/0sunset-mexico-beautiful-sunset-normalmilkmoneymomFast Forward.https://milkmoneychronicles.com/2015/08/09/fast-forward/
https://milkmoneychronicles.com/2015/08/09/fast-forward/#respondSun, 09 Aug 2015 22:56:51 +0000http://milkmoneychronicles.com/?p=478Continue reading Fast Forward.]]>The way I consumed information started to change. I joined a few Facebook groups for craniosynostosis searching for comfort from others who had gone through the same experience as us, and yearning for the reassurance of positive outcomes. While I didn’t actively participate in these groups at first, I did constantly read stories, feedback, suggestions as much as I could. Real stories, real outcomes, real successes. It was here that I learned of an amazing organization, Cranio Care Bears [please check them out at CranioCareBears.org] and donate if you can!

Cranio Care Bears is an organization started by two mothers of cranio children. They send out care package donations to children who are scheduled for cranio surgery. When I first heard about this organization and their packages, I thought it was amazing. Little did I know that the one of the founders would later become one of my strongest sources of strength during Taryn’s surgery. More to come on that later….

Once we had our date, I signed up to receive Taryn’s care package online. It was the one positive thing I looked forward to in this journey associated with her upcoming surgery.

Days passed by one by one as we neared our December date. One of the fears we rarely express out loud is the fear of death. Ultimately, I would be lying if I said I didn’t worry about that potential outcome. It plagued my thoughts all the time leading up to surgery.

I scheduled family pictures, yes, because we were past due for our annual family picture session. But also, because I knew I wanted pictures of the entire family together. What if something catastrophic did occur? I wanted to be able to remember the joy we all had together for years to come in addition to the memories in my mind. Doesn’t that sound morbid in some ways? It’s hard even sharing this now and being so brutally honest about it. It is the deep down darkest fear, we don’t even dare to say out loud. I was constantly telling myself, “Jessica, your fear is irrational. These doctors do this all the time. Don’t think such horrible thoughts.” But they haunted me constantly, they were real, and I was scared, no matter how are I tried to pretend I wasn’t.

I received a call the first week in November, just over a week before our pre-op (remember the pre-op was set 1 month before the actual operation). Children’s had a cancellation and they wanted to know if we wanted to move Taryn’s surgery up to next week, November 18, the day directly following the pre-op. When I received the call I politely told the scheduler I would consult with my husband and return the call. In my mind, I thought there is no way we are moving this up to next week. I’m not ready. Not at all.

I called George, and his quick response was an emphatic “Yes, let’s get it over with! We’ll be home before Thanksgiving if all goes well, and everyone will have a more enjoyable Christmas. Think of all we’ll have to be thankful for. This will all be behind us. Let’s do it.” Instantly, I filled with tears. ….all this waiting, and I wasn’t ready. I called my mom, my dad, my boss… anyone I could think of who might tell me that moving the surgery up wouldn’t be a good idea. Everyone agreed with George, and I knew deep down inside, this was the right thing to do. So, after a long cry, I called the scheduler back and confirmed November the 18th.

Everything did easily fall into place in terms of time off of work, and planning. However, I was honestly upset that I wouldn’t receive my Cranio Care Bear package in time for surgery. It may seem like a silly thing to cry over, but at this point everything made me cry…. That night I received a Facebook message from Shelby, one of the founders at Cranio Care Bears, that looking back now, clearly was the doing of a higher power putting her, an angel, into my life.

]]>https://milkmoneychronicles.com/2015/08/09/fast-forward/feed/0cranio-care-bearmilkmoneymombw 9Care Switch & Dates Sethttps://milkmoneychronicles.com/2015/07/03/care-switch-dates-set/
https://milkmoneychronicles.com/2015/07/03/care-switch-dates-set/#respondFri, 03 Jul 2015 19:51:26 +0000http://milkmoneychronicles.com/?p=468Continue reading Care Switch & Dates Set]]>I had no idea what to expect when we first visited Children’s Hospital in Seattle. I had heard wonderful things about the care there, but had never had to put it into perspective as a mother of a potential patient. We packed up early morning, and left plenty of time for the rush hour commute to Seattle. I was worried about trying to navigate my way around the hospital. And apparently, as I drove, I absentmindedly drank a TON of coffee. By the time we arrived, I was sufficiently jittery and well caffienated (on top of nerves). My concerns about being able to find where I needed to be in the hospital were cured when I was met immediately by the reception team ready to direct me.

We had a full day of appointments ahead of us. Lots of doctors, nurses, photographers, social workers, all perfectly scheduled for us to meet one after the other. It was incredible to experience such a thorough staff. Incredible, and draining. Again, we heard all of the same diagnosis material we had heard before, and the tight grip that squeezed my heart every second never lessened. Yet, all the same, there was something indescribable that made me realize this was where Taryn needed to be. We felt resolute in our decision. This would be the staff that would care for our child, that we would trust with an impossible amount of trust (of course, completely riddled with fear).

During the visit a nurse brought in a photo album. She wanted to share with us what to expect during surgery. I had done some research online, but never experienced anything like this. This was real. I’m certain the photo album is a well thought out way of explaining the surgery to future patient parents. It’s a normal album, like you would find on anyone’s coffee table. In fact, it’s so worn, it looks like it’s been around the block some. Inside were pictures of a happy family, that looked just like someone we would relate to. The pictures chronicled their entire stay. There’s no better way to get an idea of what to expect. Seeing images online was hard, but seeing the exact set up for what your child will experience, in such a tangible form, was very hard.

I forced my fear down my throat as I started looking through the album. I didn’t want to cry. I had been strong, holding my tears back all day. There was the happy family, with a sweet little boy. The moments before handing him over to the surgeon (the part I feared the most deep inside). Then, directly after surgery. The photos demonstrated what the cords and monitors would look like, where the drain from the skull would go. The incision. I could feel my emotions building in my chest. And then, I flipped the page to the photos of the little one a couple days after the surgery, and my heart broke. Tears filled my eyes. After the surgery, swelling is expected. The amount of swelling differs depending on the child, as well as the suture that is operated on. This poor little guy had swollen eyes, so swollen that he couldn’t see. They were swollen straight shut for a couple of days! This is a common occurrence in surgery to treat Craniosynostosis. I started to cry in the office, and I couldn’t stop. The pain in that moment was too tangible, but I believe it was worth it to be as prepared as possible for what was coming. At the end of the appointment, we were sure we would schedule with Children’s and they told us a scheduler would follow up to get us a date on the calendar. We were exhausted.

Sure enough, Children’s followed up shortly after our appointment, and we scheduled for December 16. It was close to Christmas, and I was worried that we might not make it out of the hospital in time if any complications occurred for the Holiday to be special for our boys. But, we knew that the surgery needed to be done, and we are blessed with family that would help. The preo-op was scheduled for a month before hand. It’s not common for the pre-op to be scheduled so far in advance of the actual surgery. We were offered a pre-op date the day before surgery, but I wanted time after the pre-op to breathe before the surgery, especially since we lived a ways away from the hospital. I wanted to be at home the night before surgery, with the entire family.

We had a real date. After I got off from the phone with the scheduler, I was a mess. It was real. We had a date. It just repeated in my head. I know we had a date before, but part of me expected it to change based on my initial gut feelings about our care. We had no more second opinions to get. We cancelled with the first facility. And now, for certain, this was real. We had THE date.

I would cringe as I opened my eyes each morning. One day closer. My emotions were so raw. I didn’t know what would make me feel better inside. I would cry at night, endlessly, and George, he would just comfort me. He was the only person in the world who truly understood. My family was so sweet. My friends were so caring. And yet, I would find myself frustrated out of my mind at times when I talked to them. “It’ll all be okay,” they would usually say. And I would want to scream. In all fairness, no one knew what to say to make us feel better. Truly, there likely was nothing that could have been said that was “right.” I felt lost. I prayed every morning, afternoon, evening. Each day I started out on my knees, in tears, beside my bed, thanking the Lord for what we had today, and praying for strength to make it through tomorrow. I wanted so badly just to focus on this next month with Taryn as peacefully as I could. My wild emotions made that very hard.

]]>https://milkmoneychronicles.com/2015/07/03/care-switch-dates-set/feed/0harding (63)milkmoneymomTaryn and FmilyJumping Through Hoops and Raising Barshttps://milkmoneychronicles.com/2015/05/31/jumping-through-hoops-and-raising-bars/
https://milkmoneychronicles.com/2015/05/31/jumping-through-hoops-and-raising-bars/#respondSun, 31 May 2015 21:00:54 +0000http://milkmoneychronicles.com/?p=458Continue reading Jumping Through Hoops and Raising Bars]]>You’d think from the title of this post, George and I were doing Crossfit. How I wish we were. Instead, we were running around trying to determine the next best course of action for our baby. Not long after diagnosis, our appointment to meet with the Neurosurgeon was set. This appointment was different. We were cool, calm and collected. I had done my research. In my mind this appointment was an interview. We knew Taryn had to have surgery, now we were trying to make sure she received the best care.

Taryn and her Cousin, Aubrie

As we sat down to talk with the Neurosurgeon (a very nice man by the way), I was prepared. Polite, but on it. The territorial and well-researched mom deep inside me seeped out of my being and there was no hiding the fact that I meant business. I was ready to interrogate. After I spoke a bit about Taryn describing what we knew so far, the doc sat back a little on his rolling stool, cocked his head to the side and asked, “Are you a Doctor?” I was surprised and instantly figured he thought I looked familiar. “No,” I said as I smiled back. “Oh, you just seem well-versed on the subject,” he said. Instantly, I had wished I had said yes. I imagined an answer of “Why yes, I am a Dr. and I will be watching you over your shoulder the entire step of this journey. Better keep your game tight.” Instead I just smiled. Inside I felt a little bit of glory because I felt like I was doing Taryn justice in the exam room. After the usual review of what would be done in surgery, it was determined we would set a surgery date in early October, provided it worked out scheduling wise. And with that, we were on our way.

George and I walked back to the car, Taryn in tow, both deep in thought. Once we started on our way home, I looked at George and said “So, what’d you think?” inquiring about his opinion of the surgeon. He looked at me, smiled, raised his shoulders and said “ehh,” with a smile. I felt the same way. The surgeon seemed nice, but did he seem right on it like I wanted him to be? Nope. Chalk it up to high standards and over protective parenting, but when your child is about to go through intensive surgery, you want to feel confident in the surgeons performing the task. We’d made some poor choices in the past, going through with surgeries where we wished we had waited, found a more qualified doctor, and listened to that little voice in our head (for example, George’s shoulder). We weren’t going to take that chance again, especially with our daughter.

So began our search for a second opinion. I don’t know why doing this seemed so uncomfortable. I wanted to do it. In fact, I wouldn’t not do it. I knew people did it all the time. I would even recommend other people do it based on my past experiences, but for some reason I felt like we were cheating on the doctors who had diagnosed Taryn. I was sure they were good doctors… they certainly were nice guys, and my internet searches turned up nothing out of the ordinary. But, I just didn’t get the comfortable feeling that I yearned for. At this point, I wasn’t sure if I would ever receive the feeling I was after, as putting your child through surgery surely couldn’t feel comfortable. Looking back now, I know we made the right move.

My dear Audrey, a nurse, and most trusted friend, recommended I check out Children’s in Seattle. She had worked with a Neurosurgeon there and thought it would be worth it to go see their team. His career was full of accolades and Children’s definitely had a great reputation. George and I decided to schedule an appointment.

Now here’s where the back and forth and jumping through hoops began. I’ll save you the monotony of our trials, but it was absurd. Our insurance allowed us to see whomever we wanted, but Children’s required a Dr’s referral. Should be easy. We just wanted a second opinion to see a Craniofacial Specialist, the type of Specialist whom we had already been referred to before, but this time, we had a positive diagnosis in hand. Piece of cake, right? Unfortunately, that wasn’t the case. Ultimately, it was the million phone calls, the faxing and re-faxing of information, the information being delivered to the wrong facility, the chart notes mix ups, etc. on top of the surgery situation at hand and my volatile emotions that nearly led me to the crazy house. I’m sure if you ask my colleagues at work, they’d agree — I nearly lost my mind.

In the meantime, surgery was scheduled for October 15 with the first pair of Doctors, and the date was approaching quickly. We wanted to be sure to get in to have the second opinion before we made a decision, but the “preferred” timeframe for the surgery was coming up fast. I know now that having surgery right at 9 months is not a huge deal, but at the time, I was unaware and working so hard to control the situation (with no reins at all) and meet our dates. Finally, we made our first appointment at Children’s. I felt so relieved to have made progress. With so many things feeling out of control, I had made one thing work. The appointment was 1 week before our other surgery date….

]]>https://milkmoneychronicles.com/2015/05/31/jumping-through-hoops-and-raising-bars/feed/0IMG_4103milkmoneymomTaryn and her Cousin AubrieDiagnosed.https://milkmoneychronicles.com/2015/04/25/diagnosed/
https://milkmoneychronicles.com/2015/04/25/diagnosed/#respondSun, 26 Apr 2015 01:31:46 +0000http://milkmoneychronicles.com/?p=441Continue reading Diagnosed.]]>There’s been an unusual lapse between my last string of posts and this post. At first, I didn’t think much of it. But as more and more time started passing, and I felt the urge to write to get this one out of my system and move on, I found myself in a strange state of paralysis. And then, it hit me. This next post would be the diagnosis. The day when everything became a reality. No more what if’s (in regard to what the diagnosis would be). No more, maybe it’s not true’s. This was the date when our fears were confirmed.

Even still, I sit staring at my computer screen, yearning to get it out, and hesitant to face it again. It was a hard day, and sometimes, I still pretend it never happened. I realize I need to count my blessings that pretending it never happened is even an option for me. It’s time to share, in attempt to free my mind from this life changing day.

George, Taryn, and I headed back to visit the
Specialist. On our drive there I remember feeling anxious, but less so than on our way to the CT scan. George was positive. I desperately needed that. We numbly made our way to the waiting room. It felt like an eternity before we were called back to the exam room, but in reality we waited only 10 minutes or so. They roomed us in the same exam room I was in when they told me Taryn might have Craniosynostosis. Walking into that room brought back a flood of emotions. Thank goodness this time, I knew where the kleenex was stored.

George and I sat in silence as we waited for the doctor. The air was heavy, saturated with prayer, fears, and even with hope.

The doctor finally entered. Immediately I noticed his hands were awkwardly full. He had TWO model skulls in his hands. That’s the moment I knew. I knew it right in that instant, before he said anything at all. My face grew hot, I clenched my teeth, and my heart sank to a new low. More than one model was needed to show a visual comparison. Taryn’s diagnosis was positive for Lambdoidal Craniosynostosis.

The doctor sat down and did indeed verbally confirm our fears. I couldn’t look at George. One sideways glance and I could tell he was trying to hold it together as he bounced his baby girl on his knee. I just couldn’t look at him. I knew I would be unconsolable. I tried desperately to hold it together because I knew what I would learn next was important, that I needed to pay attention to what was being explained, but the flood of emotions inside felt like a tsunami knocking on my soul.

The doctor pulled up the CT scan on the computer in the room. The results were easy to read, even to the medical novice. On one side there was a clear line, showing the open suture. It was healthy and allowing Taryn’s brain to grow with ease. The other, white smooth bone, with no suture at all. This closed suture creates pressure on the brain and doesn’t allow for normal brain growth. The brain wants to grow and so the body attempts to make more space by crowding a different suture, in lambdoid babies it’s the opposite front side that begins to boss forward.

We discussed surgery options, and learned that roughly 9 months (only 1 month away) would be the optimal time for Taryn’s surgery. I cried. I tried to stifle it, but it was impossible. Next steps would be meeting with the Neurosurgeon who would partner on the surgery. We asked questions and tried to be as thorough as possible, while internally trying to process our wild thoughts and manage our emotions. The doctor stated multiple times “this is a major surgery.” Those words would roll through my mind like a loose cannon for the next few months. Sure, we knew it would be intense, but to hear a medical professional describe it that way heightened my fears. I would say I was terrified, but that word seems far too gentle of way to describe it. You get my point.

We drove home, knowing we would schedule the appointment with the Neurologist. The ride home was a blur. I cried and cried. Called family members, and cried some more. George was strong and comforting, but inside I knew he was struggling to be my rock. That afternoon we held our baby so tight riddled with fear, while she just bounced seemingly healthy along, with no worries in the world or understanding of what was coming her way.

This began the repeated nights, mornings, lunch breaks on my knees in prayer. Gut wrenching pain, and then masking it for the rest of the world. I was simply trying to get through — one day at a time.

]]>https://milkmoneychronicles.com/2015/04/25/diagnosed/feed/0harding (23)milkmoneymomIMG_4177That Scan.https://milkmoneychronicles.com/2015/02/25/that-scan-2/
https://milkmoneychronicles.com/2015/02/25/that-scan-2/#respondWed, 25 Feb 2015 17:40:53 +0000http://milkmoneychronicles.com/?p=437Continue reading That Scan.]]>We didn’t have to wait long for the CT scan appointment to arrive. Thank God. As we waited, I lived in a private, tortured state. To the outside humming world, I appeared fine. Inside, I was falling apart. On an nightly basis I would frantically and neurotically research online, consuming anything and anything about Craniosynostosis.

Baby T and Momma.

One night, as I laid on the couch late at night, everyone else in bed, I was doing my usual search on my phone for stories, medical cases, definitions and outcomes when my worst fears were written on the screen in front of me. A potential complication of the surgery: death. Now let me say this is not a normal outcome, and the risk this surgery presents is similar to many other surgeries where this is a potential outcome.

But those words, actually seeing them written (from a reputable source I might add), so clinical and resolute, shut me down. I turned off my phone a midst my tears, made myself go to bed.

I did very little research after that point.

The morning of the CT scan, such a standard and simple procedure, I was a wreck. My stomach was so upset that I wasn’t sure how we would leave the house. George and I gathered up Taryn and headed for the medical clinic. I was a complete bundle of nerves. Couldn’t eat, couldn’t think. And again, this was just a simple sedation. I wondered throughout the day how I would handle an actual surgery if it came to fruition (and in my heart, I knew it would).

The staff was wonderful. The entire time we prepped her for sedation I was on the verge of tears. I couldn’t help but cherish, and yet loathe how innocent she looked in her hospital gown. George was my rock. He would know when he needed to step in, because I was so raw. And in turn, like any good partnership, I tried to do the same for him. Though it certainly was him who was the rock. When they started her IV, somehow, I didn’t cry. Again, I found myself looking to the sky, pinching my fingers and swallowing hard to keep my tears in. Finally it was time to take her back to the actual procedure room. The staff was kind enough to let us go with her while they sedated her. They warned us over and over that she might react uniquely when sedated. Some kids get cranky. Some go peaceful. But really, how your child will act is unknown to everyone, and not predictable at all. The medicine they would use was called Propofol. “Wasn’t that what Michael Jackson died from?” I wondered inside my head. Silly I know, but my mind was swimming uncontrollably. I felt so out of control.

I tried to prepare myself as we walked down the long corridor to the procedure room. Once we crossed the threshold into the CT area, we met the staff and placed Taryn on the table. Again, they described how she might react strangely as the sedation was administered. That final bit of warning was all I needed to give George the reigns. I knew he had to be the one to hold her. I didn’t think I could trust myself even at that point. We both gave her kisses and they began to inject the medicine into her IV. Scared isn’t even a strong enough word.

She began to fall back slowly as the medicine filled her tiny veins. And yet, she fought the sedation. My stubborn baby girl would not go to sleep. The dial on the atmosphere in the room turned up momentarily, as they rushed to give her another dose of medicine. There’s no way to describe the way she looked as she fell asleep. George kissed her. I kissed her. She grasped for our face. She looked like she was… leaving. Not going to sleep, but physically leaving her body. They rushed us out of the room as tears were flowing freely and like that the door closed behind us. The chaos was gone, and George and I were left standing in the empty hallway to head back to the waiting room, alone and in silence. We held each other up as we walked back to what felt like our holding cell. And we waited. It felt like an eternity. How could I deal with surgery? How? I could barely deal with this.

The procedure truly was quick. And though it felt like forever to us, within only 15 minutes or so Taryn was wheeled back to where we could see her. Like a champ, she came out of anesthesia wonderfully. She was happy and smiley and capturing the hearts of the nursing staff as soon as she woke up. The roller coaster of a day was finally over. We took Taryn home and snuggled her up. And then, we found ourselves waiting again… This time for real results. The hard, cold truth. And yet, this time, I didn’t google. I didn’t push for answers. I didn’t rush the doctor. For some reason, at this point, I was content being where I was.

I was pretending like nothing was wrong. 2 weeks after the appointment, we were scheduled to head back for our results. George was coming with me this time. There was no way we would separate for another appointment like this again.

]]>https://milkmoneychronicles.com/2015/02/25/that-scan-2/feed/0Daddy and Baby GirlmilkmoneymomBaby Girl and MommaThose Fated Wordshttps://milkmoneychronicles.com/2015/02/08/those-fated-words/
https://milkmoneychronicles.com/2015/02/08/those-fated-words/#respondSun, 08 Feb 2015 21:26:42 +0000http://milkmoneychronicles.com/?p=398Continue reading Those Fated Words]]>This was a day of the unforeseen. We all have days like this. When something occurs, so out of the expected, that there’s not really a way to put your reaction into words. Taryn and I headed to the medical facility in Tacoma. I was familiar with this campus from taking my oldest son there when he was young. I felt prepared for the drive, prepared with the small details as to where to park, and ultimately, prepared to hear that my daughter may need a helmet. When they called us back to the exam room, I wasn’t nervous. Not at all.

The doctor came in and immediately began looking at Taryn’s head, feeling all around as he made some small talk.

The Princess in Wait…

After feeling around for a bit, he sat back surprised and said “I’m not sure why they sent you to my office, it seems she should be seen in our plagiocephaly office, where you’ll get fitted for a helmet.” My heart sank a little. Knowing what I know now, I feel embarrassed to even say that was my response. I should have been jumping for joy. You see, I was frustrated that we wouldn’t have a resolution that day. That I might have to wait to see another doctor. And, that I had wasted time waiting for this appointment, when it really wasn’t what was needed.

Just as the doctor was finishing up, he paused as he felt the back of Taryn’s head.

“Wait a minute…” he whispered. The sudden concentration of the doctor took me by surprise. He started feeling around more and looking at her from different angles. “I see something different that I didn’t see before. Actually, I think your doctor may have made a very good recommendation for you to come see me.” He swiveled around to look at me from his stool with a serious look on his face. “I think her right lambdoid suture may have fused prematurely, which is called Craniosysnostosis. When this suture closes, it is most often missed because it presents so closely to plagiocelphaly.” Those words, they didn’t mean anything to me yet. I pushed down the fear in my chest, not knowing what I was being told, but not wanting to be overly concerned. The doctor began explaining that surgery was often needed to relieve the pressure on the brain, so developmentally Taryn could thrive, like a normal child.

Bricks. A million bricks fell from the sky, right onto my chest. I swear I felt my heart stop. I couldn’t breathe. Surgery — wait weren’t we just here for a helmet? As the doctor continued I remember trying my hardest to keep it together. Silly things, like squeezing my hands together so that I wouldn’t let my tears fall from my eyes. The doctor went on, explaining that this is a “serious surgery.” That it would be intense. That they would remove half of my daughters skull and switch the sides. She would have an incision from ear to ear. Nine months is about the perfect time for this to occur. She will likely have a blood transfusion… and I lost it. I couldn’t hold it in. It was surreal. Tears began to fall. I couldn’t process my thoughts.

The doctor politely handed me a box of kleenex, I could have used the entire box. I knew I had to pull myself together and somehow, I did — just enough to finish the consult. We would need a CT scan to fully diagnose. The doctor stepped out of the room to grab his camera to take pictures. When he did, all I could do was text my mom quickly “Something is wrong.” I had to tell someone, and I wanted it to be George, but I knew he would want to talk ASAP, and I couldn’t yet.

After some pictures of Taryn’s head and plan for the CT to be scheduled, we were almost ready to go. I knew they would have to sedate Taryn for her CT scan because there was no way she would hold still. The kind nurse warned me that it could be hard to see the sedation. I was grateful for the warning, but none the less it caused more tears. When I finally gathered myself and Taryn all together, we walked back to the parking garage.

Of course my mom had blown up my phone with texts. She already had a prayer chain going, and the words of kindness I received instantly saved me. I had a plan to tell George as soon as I could, after I calmed down. I knew he would be worried, but if I couldn’t speak, it wouldn’t do any good. My plan yet again didn’t go as I expected. As if he had a sixth sense, George called as soon as I put Taryn in the car and dropped my head into my hands in a full on breakdown. I knew I needed to answer. The poor guy, trying to discern what I was saying between sobs, in a parking garage with poor reception. I did my best. When I was finally collected enough to drive we headed home.

Against my better judgement, the researching began. The forums, Google-ing like crazy into the night, trying to understand what “could” be happening, what we might have to go through. Part of me wanted to believe that the doctor over-shared. What if Taryn wasn’t a positive diagnosis, and I had gone through all this. But, deep down I knew that the doctor shared what he did because her symptoms were clear after further investigation. The more I researched, the more I realized Taryn’s symptoms matched completely with Lambdoid Craniosynostosis. We scheduled the CT scan. George remained calm, as one of us needed to. And then we waited.

We waited on the next step in our long journey. This next small step, a CT scan with sedation scared me enough that I had no idea how I would handle a surgery.